Wednesday, August 18, 2010

First, Do Nothing

The New England Journal Of Medicine has published an astounding randomized controlled trial this month. 151 patients with metastatic, terminal non-small cell lung cancer were randomized to either receiving experimental chemotherapy alone versus chemotherapy plus palliative care. The group introduced to a palliative care specialist early in the diagnosis experienced a higher overall quality of life as the clock ran down. This part of the study shouldn't be surprising. The benefits of early involvement of an end of life specialist have been known for a while. Patients get better pain control, feel more in control of their lives as the disease unfolds, and are able to address end of life issues more honestly and openly with a professional. The psychological and emotional benefits are simply incalcuable.

The surprising part of the study was that the patients in the chemo/palliative care group lived an average of3 months longer than the chemo alone group. This, despite the fact that the patients in the palliative care group often decided to forgo additional aggressive treaments as they deteriorated.

What does this mean? Can we attribute the small, but significant, benefit simply to the effectiveness of palliative care? Or can we extrapolate further? What if patients who deferred chemotherapy altogether or only underwent an abbreviated course of treament had a survival advantage? Wouldn't it be reasonable to conclude that the chemotherapy itself was the determining variable?

Let's be honest. The literature on salvage chemotherapy in stage IV cancers is pretty weak. Survival "benefits" are quoted in terms of weeks or months. This stuff is basically poison blasted into your veins, in the hope that maybe, possibly, hopefully you will live a couple months longer than the guy who buys a ticket to Costa Rica and sits on a beach drinking Pina Coladas until he dies.

I've always been uncomfortable with the entire rationale behind "medical oncology" in stage IV, terminal disease. Many of these guys are peddling pipedreams and exploiting a very vulnerable patient population for financial and academic gain. It's good to see an RCT paper like this one to help tilt the perception back toward a "less is more" mentality.

11 comments:

Anonymous
said...

"longer than the guy who buys a ticket to Costa Rica and sits on a beach drinking Pina Coladas until he dies."

most of the emaciated, bone pain suffering, seizing, anemic, terminal cancer patients I've seen don't feel like sitting on a beach sipping a Pina Colada. These ugly diseases have ugly ends. I realize you were using the image rhetorically, but considering the unpleasant reality strengthens your point: the end of life is fraught with challenges and indignities. Palliative care specialists can offer invaluable benefits that aren't found in any chemo regimen.

Every once in a while someone responds. Someone beats the odds. Someone has a tumor that actually goes away.

My family member has survived Stage IV melanoma. Check on the odds of that. Now over 5 years and counting every day.

What we need is to unlock the code that determines why one patient's tumor will respond while another won't. And yes... stop selling pipe dreams. Be honest. Give your patient the best understanding and care possible.FaST Surgeon

Chemotherapy in stage IV is not always aimed at specifically 'prolonging life'. Chemo itself can be palliative, as it is often used to shrink tumors that have unbearable symptoms. Like a tumor that is compressing the airway, leading to inability to breathe or mets to the brain... Can't enjoy the Pina Coladas if you cant breathe.

Wow, what a cheerful topic!!, whats next? what they do with aborted babies??(same thing they do with the Gallbags you take out) Speaking of Costa Rica, they have there own Sara Palin, Laura Chinchilla-Miranda, MILF-y 50-something, has a Masters from Georgetown, opposed to Abortion/Same-Sex-Marriage/and the "Morning After Pill" Had an out-of-wedlock baby, but did the right thang and married the guy a few years later... Too bad she's a Socialist :(

DIT-You raise a decent point, but the medical literature on chemo in stage iv disease predominantly revolves around the idea of "survival". All the billions of dollars the pharm companies invest in these drugs are for the purpose of finding one that leads to modest survival gains. If survival isn't enhanced, they move on to the next potential magic bullett. They arent in the business of palliative shrinking; that benefit is a mere secondary result. My experience is that the radiation oncologists play a far more prominent role in palliating symptoms i.e. zapping brain or spine mets.

I have stage 4 cancer (a rare type of colorectal with inoperable lung mets), and I have chosen to not receive chemo. Friends think this must have been a terribly difficult decision, but it wasn't. I reflected on exactly the factors that Buckeye outlines and concluded that I'd rather feel as well as I can for as long as I can than do chemo and feel bad much of the time and survive---maybe, maybe not---a few extra weeks.

I was pretty shocked when I realized that cancer treatments are often evaluated in terms of how long the patient remains technically alive. This is a crude measure of success. And there is a sort of cultural pressure for cancer patients to "fight on" and endure every possible treatment, as though that is normal and any other approach reflects a depressive attitude on the part of the patient. I don't think people understand how bad the odds are and how difficult it can be for the patient and family to endure these treatments. I don't want to pay the price of other people's unsupported optimism and go through near-hopeless regimens to satisfy their curiosity or their unwillingness to accept my mortality. It's true that I might be one of the lucky ones to have a truly great response to a chemo drug, but then again, maybe I might be one of the lucky ones who does best without a maximum of pharmaceutical artillery. Who knows? I make my choices and try to do as best I can under the circumstances.

For anyone who buys Buckeye's cynical opinion that chemotherapists are "peddling pipedreams" to stage IV cancer victims, I heartily recommend ePatient Dave de Bronkart's Laugh, Sing, and Eat Like a Pig. It only takes one success in a thousand to make those pipedreams worth hearing. Dave's still going strong after three years, with no new growths or additional mets. I'd say that beats the piss out of three months of Actiq lollies and lidocaine patches, even with all the pain and discomfort the Interleukine caused. I'm betting he'll agree.

From e-Patient Dave, the author of the book BillDog cites (my Google login is broken)...

First, I just love this discussion. I'm so happy to hear people thinking out loud, questioning assumptions that more care is better, or even that more LIFE is better. To each his own, but what I want is fully informed choice.

Thanks to BillDog for his note about my book. As it happens, I don't fully agree with his view. I don't read Buckeye's post as at all cynical. Yes, as my book describes, I chose hope - but the first treatment I received happened to work. (Details below.) If it failed, there were others to try, none with as good results.

If everything had failed, who knows what my attitude would be? I'm pretty sure that for some length of time I would have said "What's next? Give it to me," but only after consulting with my peer patients on the ACOR.org listserv to see about their experiences.

I do know that I got a pretty good look at Death, square in the eye, and I thought vividly about that transition. Also, I chose to use every available aspect of mental attitude - see "What's the title about" on http://LaughSingBook.com.

If it hit today, you can bet my thinking would be informed by this news about palliative care.

And, Bill, I do know there are people (docs and vendors) who'll vigorously push any treatment, regardless of what the patient wants. IMO that's reprehensible. (I'm trying to think of a recent post by a patient whose doc was quite insistent that she better start chemo now, and all hell would break loose if she didn't. And I read a pharma column in March about patients who can't afford their meds and how much it was costing the industry.)

My impression: it's a pipedream if the odds are long and the patient isn't told that very, very clearly, and given the choice.

Perhaps ironically, I think the most reliable source of informed-choice info is a strong, smart patient community. Not all patient communities pass that filter but the ones who do are great. I was lucky to have one.

I'd LOVE it if we could find a way to build strong communities of engaged / informed patients for every condition, including all of yours.

(Background: In 2007 I beat stage IV / grade 4 renal cell carcinoma - odds not quite as bad as melanoma, but same order of magnitude; my median survival at diagnosis was 24 weeks, I got nephrectomy then high-dosage Interleukin-2, and by September I was pronounced pretty much all betta. Not everyone qualifies for IL-2, and of those who do, most don't respond; but it's the only thing that produces a complete response. For me, three years out the remaining spots on my scans are presuming necrotic.)

From e-Patient Dave, the author of the book BillDog cites (my Google login is broken)...

First, I just love this discussion. I'm so happy to hear people thinking out loud, questioning assumptions that more care is better, or even that more LIFE is better. To each his own, but what I want is fully informed choice.

Thanks to BillDog for his note about my book. As it happens, I don't fully agree with his view. I don't read Buckeye's post as at all cynical. Yes, as my book describes, I chose hope - but the first treatment I received happened to work. (Details below.) If it failed, there were others to try, none with as good results.

If everything had failed, who knows what my attitude would be? I'm pretty sure that for some length of time I would have said "What's next? Give it to me," but only after consulting with my peer patients on the ACOR.org listserv to see about their experiences.

I do know that I got a pretty good look at Death, square in the eye, and I thought vividly about that transition. Also, I chose to use every available aspect of mental attitude - see "What's the title about" on http://LaughSingBook.com.

If it hit today, you can bet my thinking would be informed by this news about palliative care.

And, Bill, I do know there are people (docs and vendors) who'll vigorously push any treatment, regardless of what the patient wants. IMO that's reprehensible. (I'm trying to think of a recent post by a patient whose doc was quite insistent that she better start chemo now, and all hell would break loose if she didn't. And I read a pharma column in March about patients who can't afford their meds and how much it was costing the industry.)

My impression: it's a pipedream if the odds are long and the patient isn't told that very, very clearly, and given the choice.

Perhaps ironically, I think the most reliable source of informed-choice info is a strong, smart patient community. Not all patient communities pass that filter but the ones who do are great. I was lucky to have one.

I'd LOVE it if we could find a way to build strong communities of engaged / informed patients for every condition, including all of yours.

(Background: In 2007 I beat stage IV / grade 4 renal cell carcinoma - odds not quite as bad as melanoma, but same order of magnitude; my median survival at diagnosis was 24 weeks, I got nephrectomy then high-dosage Interleukin-2, and by September I was pronounced pretty much all betta. Not everyone qualifies for IL-2, and of those who do, most don't respond; but it's the only thing that produces a complete response. For me, three years out the remaining spots on my scans are presuming necrotic.)

One of my friends just passed away from cancer at the young age of 45. He was diagnosed with a stage 4 cancer six months ago after undergoing surgery in an emergency situation. The surgery virtually eliminated the cancer from two organ systems, but 5 months later he was hospitalized for other complications and was given a very poor prognosis for survival and even poorer prognosis of an enjoyable life. He chose hospice care and passed away two weeks later under morphine drip. He was a scientist and used a very logical approach to his decision.

I would make the same decision if I were in his shoes, and I wish that more people would do the same instead of choosing to prolong the inevitable.

By the way, when is your next Sarah Palin Pregnancy Investigation and Public Speculation by a Practicing Doctor on the Internet, Update?

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